Actiq Lollipop Addiction Scandal

[Robert H Hilley IV]

Actiq is an extremely addictive narcotic that is being prescribed "off-label" to thousands of innocent Americans. Actiq has been associated with severe, life-threatening side effects including 127 deaths. Two of the deaths involved children who confused the drug for candy. Another 47 were linked to overdoses or other misuses including addiction.

Actiq has been approved by the FDA for the treatment of intense pain in cancer patients - ONLY. The drug has NOT been approved for the treatment of migraines, headaches, back pain or other discomforts.

Addiction to Actiq is a serious and life-threatening problem plaguing innocent Americans. Actiq should NOT be used for pain relief unless you have cancer ... Actiq is a highly addictive narcotic that is NOT being prescribed properly and does not discriminate. People of all ages and walks of life are falling victim to this extremely potent prescription medication.

http://www.schmidtandclark.com/Actiq/

[Renea]

Actiq can be used for other conditions other than cancer! Cancer is NOT the only chronic pain condition that people need meds to help them function day to day with their jobs and their families...their are those with MS, Lupus, Parkinsins, AIDS, Fibromyalgia, Chronic Migraines, Chrons Disease...and the list goes on and on.
So, with this said, if my doctor chooses to treat me with Actiq for my particular chronic pain condition then it is up to me to use this med responsibly. Just because people are abusing actiq does not mean it should be limited to only people with cancer...trust me, if someone wants to abuse actiq they will get it one way or another and we All know this to be true. So, let's please back off and allow the doc's to treat us how they feel appropriate, it is because of people like you riding their backs that people in this world are not receiving adequate pain control and are either taking street drugs b/c docs are afraid to write the scripts or they are blowing their brains out b/c the pain is intolerable.

[Robert H Hilley IV]

You are incorrect in your assumption that we are trying to limit the way doctors prescribe a medication. The doctors are allowed to prescribe "off-label" ... the manufacturers are not allowed to promote the drug "off-label" ... herin lies the problem. The FDA approved the drug, which is 80 times more potent then morphine to treat cancer patients ONLY ... a drug that powerful should not be promoted by its manufacturer to treat headaches and backpain.

Wall Street Journal Article: http://online.wsj.com/article/SB1164078800598...

Actiq Attorneys: http://www.schmidtandclark.com/Actiq

[SBRon]

As in-house counsel for a managed care MediCal program, we see incredible abuse of and addiction to Actiq. Consider that this is one reason the FDA "black box" warning is for cancer patients. It is probably acceptable for someone who is terminal to become addicted, but not for some otherwise healthy person who may suffer from pain that could be otherwise managed. We see only unethical or drug-pushing doctors willing to write scrips for Actiq for other than cancer patients.

[jimbo]

I am sick and tired of the people without pain telling the people with pain what they should or should not be taking...I have suffered wiyh chronic back pain for the past seven years..i have had 2 back surgerys (including a fusion) and every injection known to mankind,now that i am finally on some strong pain medications including actiq i can live a fairly normal life..the problem is it is hard to find a doctor to write scripts for these medications..there r 2 many people that fake there pain in order 2 obtain these medications to either get "high" or make financial gains on the streets..this makes it tuff for the doctors and for the TRUE pain sufferers...

[Dr Jones]

My husband has been using Actiq in conjunction with several other narcotic and non-narcotic medications for 3 1/2 years. He has had 13 surgeries for nerve damage in his left foot and has suffered from migraines for over 10 years. Having access to Actiq has been the only medication that helps him when he has a severe "attack" of pain in his foot and allows him to function daily. It is also a great medication for a migraine that causes so much nausea that even the dissolvable meds make him vomit. I am a physician and can tell you that many of the medications that doctors prescribe are for "off-label" uses. Pharmecutical companies apply for FDA approval on whatever grounds they can to get a medication into the market. For example, Cymbalta, was initially labelled for depression. After it was on the market, it was discovered that it helps with diabetic neuropathy. Now it is FDA approved for that also. If patients actually read the teeny tiny print that goes with many prescriptions, I think they'd be surprised.

[Tricia_in_NJ]

To the "in-house counsel" - lawyers saw incredible abuse of and addiction to Oxycontin also. There are more deaths attributed to the abuse of and addiction to alcohol then Actiq & Oxycontin combined. Why aren't you going after the liquor companies? You should be ashamed of your comment about unethical doctors prescribing Actiq. That comment is asinine.
I've been using Actiq (along w/ other narcotic and non-narcotic meds) for more than 3 years. It is prescribed by my pain management doctor. I have had 8 surgeries in 10 years for recurrent hernias that have caused chronic inquinal neuropathy, chronic genito-femoral neuropathy, and chronic pelvic pain. Why is it acceptable for drs. to prescribe Neurontin and Lyrica off-label but not Actiq?

[Debbie]

Actiq is a very dangerous drug. 80 times more powerful than moraphine! With this being said doctors need to be schooled on how to prescribe this drug. My husbands doctor is a complete idoit. He has prescribed this drug along with fentenyl patches for my husband to control back pain.. This doc is a gen. doc with no pain management training. My husband is completely controlled by these drugs. He has taken 120 doses of actiq in 12 days and says he doesnt have a problem! I ve contacted his doc and he said he would talk to my husband who in turn convinced this doc he was just fine.. This drug actiq is way too powerful for pain that may be controlled with simalar but less potent effects... This drug is out of control and most work comp companies pay for this expensive drug.. Doctors must be responsible when passing this drug out just like it was amoxicilin... wake up

[Nia]

My mother had back surgery in 1999, a fusion in 2001 and was prescribed Actiq for the first time, in 2002. She was to take 2 to 4 per day.

By 2007, she ruined her business, sold the family heirlooms and borrowed over a hundred thousand dollars to fund her drug habit. She had several doctors, several pharmacies and was up to 20-25 per day.

She appeared normal because the 20 lollipops/day she took in 2007 affected her the same way the 2 lollipops/day in 2002.

Ironically, I'm typing this in Feb 2008. Your post was May 18, 2007. Her doctors finally figured out what she was doing on May 1, 2007. They refused to refill anymore prescriptions until she entered rehab. She refused. She took her last Actiq on May 11. 2 days later,on Mother's day, May 13, 2007 (five days before your post) she committed suicide.

Be careful. I'm sure when she began taking Actiq in 2002, she never thought it would end this way.

jimbo wrote:

I am sick and tired of the people without pain telling the people with pain what they should or should not be taking...I have suffered wiyh chronic back pain for the past seven years..i have had 2 back surgerys (including a fusion) and every injection known to mankind,now that i am finally on some strong pain medications including actiq i can live a fairly normal life..the problem is it is hard to find a doctor to write scripts for these medications..there r 2 many people that fake there pain in order 2 obtain these medications to either get "high" or make financial gains on the streets..this makes it tuff for the doctors and for the TRUE pain sufferers...

[Vie]

I have been taking Actiq lollipops going on 6 years for chronic back pain. I have had 1 neck fusion and 3 back fusion to start. Then I just had a reconstructive surgury this year to repair the 3 fusion plus add a fusion.If that wasn't bad then I had to have emerg. surgery 6 weeks later because a screw backed out and crushed one of my bones. Now you want to talk about pain. Why do you have to have cancer to be treated the same way. I'm a nurse and every person should be treated the same. Pain is pain. When ask how someone's pain is rated on a the scale 1 thu 10, Eithe you have cancer or back pain or something else the answer is the same. So, why shouldn't you be given Actiq just like a cancer patient is for pain. I have been on 600mcq for 4years at 5 per day and it seems to hold me at a comfotable level. I'm still in alot of pain but if I didn't have this I would rather be dead. As of matter of fact my insurance was going to refuse to pay for it and I went with out them for 1 month. I layed in bed for that month in tears and pain. I wanted to just kill myself. I got back on Actiq and I'm better. So, what is fare?

[dm4food]

how did you get your insurance company to agree to continue to pay for it. I have been on it for three years and received a letter this year saying they will no longer pay for it because i dont have cancer. I have appealed the decision, but again they denied that. Any suggestions???

[Actiq and insurance]

I have taken Actiq for 3yrs and I just received a notice from my insurance saying that they will no longer cover it. They won't cover it unless I have Cancer. So, now I am in pain losing days with my family. I don't understand how someone can determine what kind of pain will be treated and what won't.

[Tricia J]

My experience has been that you appeal your insurance companies decision, wait for their next denial and then go to your state's commerce department or whoever handles insurance issues in yourt state and file an appeal with them.(I am currently in this process myself). The Commerce Department has its own outside doctors and if they end up deciding with the patient, the insurance company has to honor that decision. When you appeal to the insurance company, they use their own doctors and lawyers which is often why it styill gets denied. So, if your insurance company has denied your appeal, go to the next level. Make sure you send as much information that you can regarding everything that you have tried and undergone. Also, ask your pain doctor or doctor to write the Commerce Department as well suipporting why you need to stay on this medication.

I am like many of the folks that have already posted. I have fibromyalgia and degenerative disc disease and after two terrible surgeries, pinched nerves, every medication you can think of, trigger-point injections, botox injections in my spine, etc, the ony thing that has worked so far has been the combination of Methadone and Actiq for breaklthrough pain. Before this combo, I lived in bed. Actiq is a fentanyl medication simialr medication to the fentayl patch or Duragestic patch but different delivery system. My insurance okays the patch but not the Actiq. I got no warning. England passed Actiq as a great break through pain medication in 2000. We are behind.

dm4food wrote:

how did you get your insurance company to agree to continue to pay for it. I have been on it for three years and received a letter this year saying they will no longer pay for it because i dont have cancer. I have appealed the decision, but again they denied that. Any suggestions???

[pain24-7]

I have been on Actiq for 3 years, fetanyl patch and percocet because I have 3 herniated discs and radiculopathy down both of my legs. We just had to switch insurance companies and I was told it would not be covered. I have had one surgery but I refuse to have a three level fusion which I was told by the top neuro surgeon at Jefferson University that if I had that surgery, my back wouldn't be able to handle it and I would wind up in a wheel chair. I work everyday and function just fine when I have my medication. I am afraid that once I run out, I will not be able to work because my medication is the only thing that gets me through the day. I was told by my insurance company that they would pay for dilaudid. Does anyone know if dilaudid is good for pain? Please any suggestions.

[Tricia J]

I had the two herniated disks with pain going down my right leg and tried the Fentanyl patch for awhile and by itself, it didn't work and that's why they tried the Actiq with the Methadone. Before this combination, I couldn't work, spend time with my husband or any of my 6 children. I lived in bed. I was also told to have my spine fused at the L4-L5 and L5 and SI areas of my spine. My pain doctor said that would just cause me to have repeated surgeries with no relief. I am so happy I found him. The only thing I know about Diluadid is that it is again, a narcotic drug with tons of side affects. I haven't tried it myself.

[Jacob]

I was taking 15 800mcg actiq suckers a day for 4 years for severe back & knee pain prescribed from my pain mngmnt doctor. Thanks to my family doctor I have been off them for almost 2 years now. What everyone taking actiq needs to know that is taking them is that you are addicted to them. I went through 4 rehabs and it was absolute hell getting off of them. I kept telling everyone that I could not deal with the pain but the truth was I could not deal with not having my actiq. It's all a big game. The people who make actiq want all of you addicted. All they see are $$$$$$$$$. They could care less about you. There is no pain bad enough to put yourself through what I had to do to get off actiq. Trust me when I tell you, It is the worst thing you will ever go through. I almost lost my wife, family & job over it. If you are on it, get off it now, if you are thinking about taking it, Don't. I know when you are in pain constantly you will try anything to make it stop, but trust me the trade off is not worth it. The thousnds of dollars of dental bills are not good either because actiq rots your teeth quickly. One more note, I had a brain scan done a while back and they were showing me the pictures and while most of my brain pics were colorful and normal there was a med size spot that was very dark. They told me that it was the part of the brain that the actiq destroyed. They said they see the same thing in heroin addicts brain scans.

[Tricia J]

Funny, just after telling you I didn't know a thing about Dilaudid, except it being strong, my doctor told me he wanted me to try it with the Methadone. He said to start off with 2 tablets every 6 hours. They are the tiniest white pills I have ever seen but boy, they hit me like a hammer. I had the worse migraine right away. So, that's my experience with them so far. I can't say they helped my leg or back pain any. Perhaps you have started them and you can say what kind of response you have had. I know I'd like to hear.

As far as the Actiq comment goes about being addicted and having tooth issues, I have found that I was spending more time at the dental offices because or Actiq and the generic, the fentanayl citrate lollipops. And, yes, I owe thousand of dollars for my teeth now.

However, I have been off of the Actiq since just before Christmas, wasn't weened off, they just stopped paying for them, so I was done, cold turkey. With what they cost, I can't afford them without insurance help or someone who is wealthy and would be willing to pay for them for me and I know no one who would or is capable of doing that. I wasn't given anything to get off them and didn't go to treatment. How long after stopping the Actiq did folks find out they needed treatment? Right away or did it just start creaping up on them after awhile and they started to feel like something was up or they couldn't cope or what? I'm curious because if I could still go through somthing like that, I want to know and I want to tell me family. What is the half-life of Actiq?

pain24-7 wrote:

I have been on Actiq for 3 years, fetanyl patch and percocet because I have 3 herniated discs and radiculopathy down both of my legs. We just had to switch insurance companies and I was told it would not be covered. I have had one surgery but I refuse to have a three level fusion which I was told by the top neuro surgeon at Jefferson University that if I had that surgery, my back wouldn't be able to handle it and I would wind up in a wheel chair. I work everyday and function just fine when I have my medication. I am afraid that once I run out, I will not be able to work because my medication is the only thing that gets me through the day. I was told by my insurance company that they would pay for dilaudid. Does anyone know if dilaudid is good for pain? Please any suggestions.

[allan]

pain24-7 wrote:

I have been on Actiq for 3 years, fetanyl patch and percocet because I have 3 herniated discs and radiculopathy down both of my legs. We just had to switch insurance companies and I was told it would not be covered. I have had one surgery but I refuse to have a three level fusion which I was told by the top neuro surgeon at Jefferson University that if I had that surgery, my back wouldn't be able to handle it and I would wind up in a wheel chair. I work everyday and function just fine when I have my medication. I am afraid that once I run out, I will not be able to work because my medication is the only thing that gets me through the day. I was told by my insurance company that they would pay for dilaudid. Does anyone know if dilaudid is good for pain? Please any suggestions.

hi; i have taken dilludid for pain, and if he gives you the stronger dose it's good but i would ask for morphine pills, it's accually oramorph,i read your blog, and i also take actiq for pain,but my pain dr is going out of business,can you give me the name of your dr who will prescribe actiq for pain. i don't know what i'm going to do when he leaves in june. i've been looking for any pain doctor in jersey that will give me actiq for my pain,but nobody will. i had 7 back operations, and without my meds actiq i wouldn't be able to get out of bed my e-mail is [e-mail] i will travel if i have to thank you so very much alan

[Dont-give-up]

Have your current dr. refer you to a good Pain Clinic before he leaves. Also, ask him to tell you about any or all other Pain Clinics in your area and ask that he give you a referall to the others as well (just in case one of them doesn't work out). If you get to a good Pain Clinic, you shouldn't have any problems getting the same medications. Make sure that you tell them the meds. that work and that don't work for you.

[Big D]

Renea wrote:

Actiq can be used for other conditions other than cancer! Cancer is NOT the only chronic pain condition that people need meds to help them function day to day with their jobs and their families...their are those with MS, Lupus, Parkinsins, AIDS, Fibromyalgia, Chronic Migraines, Chrons Disease...and the list goes on and on.
So, with this said, if my doctor chooses to treat me with Actiq for my particular chronic pain condition then it is up to me to use this med responsibly. Just because people are abusing actiq does not mean it should be limited to only people with cancer...trust me, if someone wants to abuse actiq they will get it one way or another and we All know this to be true. So, let's please back off and allow the doc's to treat us how they feel appropriate, it is because of people like you riding their backs that people in this world are not receiving adequate pain control and are either taking street drugs b/c docs are afraid to write the scripts or they are blowing their brains out b/c the pain is intolerable.

I am an Actiq user and have been for the last eight years. I do not have cancer. What I do have is chronic pain associated with degenerative joint disease and chronic pain associated with diabetic peripheral neuropathy. The ONLY way I can function from day to day is by using Actiq. I also use methadone and Duragesic patches. One should not make assumptions until one has walked a mile in another person's shoes. I am closely monitored by my doctor and have been using this pain management regimen for eight years. Until I started using Actiq and the other pain meds prescribed to me by my doctor, I contemplated suicide rather than spend my life laying in bed. I thank God for my meds every day. I have used the same dosage that I am presently using for these eight years. I was on straight morphine for several years before I was introduced to Duragesic and Actiq. I was downing at least 60-80 tablets of morphine a day. The daily dose was in excess of 6000mg. I collapsed from respiratory failure in 2001 and nearly died. That was when I switched doctors and pain clinic for the one I have been with since then. They got me off morphine and put me on fentanyl which is much easier to administer since it comes in patches instead of pills. Morphine was slowly killing me. When the doctors decided to put me on Duragesic and Actiq, my life became much more manageable. I wasn't in a walking stupor any longer. I felt alive again. I became more active. I would hate to think that someone would have to get cancer before they could benefit from the miracle of fentanyl. There is now a generic form of Actiq so my copay is also more manageable. Duragesic has been available in generic for a whille longer than Actiq. The only reason I mention this fact is for those of you that are disabled and living on SSD. It helps! Actiq and the other forms of fentanyl should be available to anyone that can tolerate it. So what if I get addicted, it's not like I am ever going to recover from my diseases. I'll be dead in a few years and I would like to live the rest of my life as comfortable as I can. Why would you want to deny me that? If I can get even a small relief from my pain, it should be my doctor's discretion that determines the quality of my life, not some "big brother" that would deny me because I don't fit in some PDR protocol. I hope I've made a reasonable arguement for Actiq dispensation. Your doctor should be your angel, not some archaic regulation. Thank you